DbI Review
Number 47 • July 2011
Deafblind International was formerly known as the International Association for the Education of Deafblind People.
DbI Review appears twice yearly, the two editions are dated January and July.
The editor will be pleased to receive articles, news items, letters, notices of books and information on forthcoming events, such as conferences and courses, concerning deafblind children, young adults and older people. Photographs and drawings are welcome; they will be copied and returned.
All written material should be in the English language and may be edited before publication. It should be sent for publication to arrive by the date below.
Opinions expressed in articles are those of the author and should not be understood as representing the view of DbI.
DbI Review is also available on disk. If you are interested in receiving your copy in this format, please contact:
DbI Secretariat
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WA 6100, Australia
Telephone (08) 9473 5422
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Editor
Stan Munroe
Design
Geoff Dunn
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DbI Secretariat
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Stan Munroe and Secretariat
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Cover: Denise helps Nuno with the Happy Birthday song.
A message from the President
Dear friends and colleagues,
They say, life begins at retirement; we shall see!
If people concentrated on the really important things in life, there’d be a shortage of fishing poles!!
I will be retiring from my role as President of DbI at the World Conference in Sao Paulo in September and I am planning on doing plenty of fishing! I have enjoyed every minute of my eight years as President; made particularly special by all the people I have met along the way. Being President has allowed me to see the world, but more importantly it has enabled me to get to know so many wonderful, dedicated, passionate people over the years, including those who are deafblind, their families, significant others in their lives and professionals working in this field.
DbI is a network organisation, with groups of people from around the world working together to share and develop specialist knowledge and practice. I feel proud and lucky to have been part of this exciting organisation.
I started working with deafblind people in 1973 and in 1978 I attended my first IAEDB (now DbI) conference in New York. It was an experience that was to change my life. Since then I have enjoyed four years as Vice President and now eight years as President of DbI. I have been involved in many different projects and networks with people from all over the world
DbI has grown bigger over time but it has not lost the family atmosphere which makes it so special.
We are now entering a time of change with a new President and Vice Presidents to be chosen. I know that DbI will be able to manage this time of change and transition with all the energy and passion that the members always put into everything they do.
Even though my President’s role will be over, my commitment to DbI and deafblindness is not. So expect to see me around.
Finally, thank you everyone for being so dear and important to me and so dedicated to the development of knowledge and sharing of practice through DbI. Please stay in touch and if you feel so inclined, join me by the lakeside!
William
Editorial
Dear Friends,
This edition of the DbI Review makes for a great informative summer read. You will be inspired by the excellent feature articles scattered throughout this edition. For me as a parent of an individual with congenital deafblindness, the opening article on olfaction comes close to home. I can relate to incidences that confirm my son’s memory of familiar smells helping him recognize people he had not seen for a time or pleasant food treats like his grandmother’s baking.
You will be touched by the story from Vula about the rescue of a beautiful little girl from the Amazon region of Brazil who was going to be sacrificed because she was deafblind. Hats off to the family who is determined to raise her and seek out the best resources for her education. There is another great story, again from Brazil, about Denise who bravely decided to change the direction of her life and move to northern Brazil to help a boy with CHARGE Syndrome.
There are many other special stories about people who are deafblind achieving such ‘first’s’ as: the first Norwegian woman with this disability to run the New York Marathon; the first to open the day’s trading at the Toronto Stock Exchange, and the first to throw out the ceremonial first pitch at a professional baseball game. This brief review would not be complete without mentioning Alex from Guatemala trying his hand at art or the young girl scouts from Perkins with their cookie sales project. Also, take a look at the students in Sharon Grassick’s classroom in Perth Australia, doing Tai Chi.
Time is speeding by as we close in on the XV World Conference scheduled for Sao Paulo, Brazil, September 26-October 01. If you haven’t registered yet, please go to the conference website to register. I have a special plea to members and colleagues to support this excellent event in Brazil. The organizers took on the planning for this event with very short notice, and they are working incredibly hard to make this conference a success. I know you will not be disappointed with what is in store for you in Sao Paulo! The folks there are very experienced in organizing conferences, so you will be in for a wonderful event.
Some may think this is just a regional conference, considering that many of the presentations will be from South America. DbI organizes its conferences in different parts of the world for local or regional organizers to promote their accomplishments to the international community. Conference hosts also take on these events as an opportunity to explain to local government officials and funders about deafblindness and the need for better services. The last conference held in South America (Cordoba, 1995) was a catalyst for the eventual flourishing of deafblindness programs throughout Latin America.
Finally, thanks to all the contributors who responded to requests for material for this edition of the magazine. I trust you will enjoy this edition; your comments are most welcome.
Stan Munroe
Letter to the Editor
Dear Stan,
Thank you for your warm and thoughtful message. I am touched with your consideration.
As you mentioned, and as you may watch on TV, we (in Japan) are suffering from the earthquake, aftershock, Tsunami and an accident of a nuclear plant. Fortunately the region we are living is not affected, but still they are suffering from the results the earthquake has brought. We are not sure how many people with deafblindness are suffering, because there are a lot of invisible deafblind people in Japan. We are still working on what we can do for them.
We are very pleased and proud of being on the cover of the last edition of the magazine. I am very moved because someone up north in the sphere is caring about us.
Thank you again.
Sincerely,
Akemi Fujii
April 17, 2011
Contents
A message from the President Page 2
Editorial and Contents Page 3
Articles
Scents that make Sense Page 4
Sign Chi: signing a way to relaxation and stress reduction Page 12
Lessons of character Page 14
New resource in Latin America Page 16
Message from WFDB Page 17
Helen Keller International Award Page 52
Deafblindness and Mental Distress page 61
Norwegian woman runs NYC marathon Page 64
CHARGE Syndrome in Italy Page 66
Network News Pages 46-51
Employment, CHARGE, Outdoor,
ADbN, Communications, Siblings,
Rubella, Tactile Communication,
EDbN, New Network Proposal
Country News Pages 18-41
Australia, Brazil, Canada, Colombia,
Guatemala, Ireland (p. 44), Romania, Spain,
Venezuela
Conferences and announcements
DbI PreConferences Page 11
DbI Conference Program Page 42
ADBN Conference first announcement Page 44
DbI European Conference first announcement Page 45
Sense UK Chief Executive Page 54
Director of Perkins International Page 55
Ahimsa celebrates 20 years Page 56
Book – An Exceptional Fellow Page 58
Book – Dangerous Pregnancies Page 59
Device – Screen Braille Reader Page 59
DbI News and Membership
DbI ManCom travels to Singapore Page 60
Report from DbI Vice President Page 68
DbI Conference Committees meet Page 69
News from the Secretariat Page 70
Membership information Page 71-72
Scents that make sense
…examining the possibilities offered by using different odours to support learning with children who are multi-sensory impaired
The Seashell Trust, Manchester, is working with PZ Cussons (UK) Ltd to understand more about the ways that scent might be used effectively as part of the learning process with deafblind students. Anne Gough, from Seashell Trust, and Kate Williams, Creative Perfumer at Seven Scent, describe the early work....
About Seashell and PZ Cussons and the background to the partnership
The Seashell Trust runs a special school for children aged 3 – 19 years of age and a college for young people up to 25. It offers day and residential specialist provision for those with sensory impairments and severe or profound learning difficulties and significant communication difficulties, including ASD. For each child having difficulties achieving their potential within a traditional classroom setting, Seashell Trust provides a fully integrated service with highly qualified professionals and support staff, specialist facilities and high staffing ratios.
PZ Cussons in the UK is part of a leading international consumer products group, working in 10 countries, which also has its own Fragrance House, called Seven. The organisation has a committed approach to the development of local community partnerships and charitable initiatives.
The Background
Five years ago Anne Gough made a change to the way the curriculum had been organised in the Seashell Trust school. After some pilot studies, she introduced individualized education programmes (IEP’s) that focused on each child’s individual needs. It was immediately clear that the children taught using this approach and working with the modified national curriculum, made significantly better progress in communication, independence and physical development compared to a more classroom- based style.
A wide range of communication methods are used at the school including intensive interaction, on-body and hand-under-hand signing, British Sign Language, Sign Supported English, objects of reference, pictures/photos of reference, symbols and text. Learners, who have not yet begun to interact in a meaningful way with the environment, require additional sensory input and consistent routines to help them begin to anticipate events. So teachers at the school are always looking for innovative ways to support the children’s development.
This project was born out of observing some of the children already using their sense of smell to help them to identify people, places and objects. The questions were asked about how multi-sensory impaired children use their sense of smell and whether olfactory cues could improve the children’s understanding and ability to make choices.
Our sense of smell
Our sense of smell differs from our other senses being the only sense to send information directly to the brain. Information received through our other senses is first analysed in the body via neurons and the central nervous system to identify what to attend to and what to ignore (Brown, 2007). Olfactory information has a direct path to our limbic system, which is why smells trigger strong emotions and memories. There is evidence that memories triggered by smells, rather than by sights or sounds, often link to the early stages of life, suggesting that olfactory memories are laid down earlier (Willander and Larsson, 2007).
It also seems that memories triggered by odours are more emotional and more immediate than those linked to sounds or sights. The sense of smell is linked to our recognition of family and friends and our ability to respond to others’ emotions (Aglioti and Pazzaglia, 2011). It affects social interaction and attraction in number of ways (Stockhorst and Pietrowsky, 2004).
There is some evidence that sense of smell is linked to motor planning and in one study it was found that smelling fruits or sandwiches triggered grasping actions. (Tubaldi et al, 2010).
Research with people born blind suggests that they are better than sighted people at odour detection (noticing that a smell is present) and odour awareness, especially regarding smells related to people. It is likely that blind people attend more to odour as a way of identifying people (Beaulieu-Lefebvre et al, 2011). Different studies in this area show varying results, perhaps because of different methods used in research.
An account by an adult with acquired deafblindness describes the range of information he gets through smell as his only possibility of gaining distant impressions of events happening around him. In the same account he writes of his pleasure walking through a store selling different kinds of food and of information he gets from odour at different stages of familiar journeys (www.deafblind.com).
When different information is available through our different senses, usually vision takes precedence; occasionally hearing (Aglioti and Pazzaglia, 2011). When the combination of similar information is received from several senses simultaneously (for example, smelling smoke, seeing flames, hearing fire alarm), the efficiency of our actions and reactions increases.
Sounds promising ...but a warning
So, it could be concluded that emphasising the use of smell, as well as touch and residual vision and hearing, is therefore likely to be helpful to multi-sensory impaired (MSI) learners; but we need to be careful. David Brown (2007) describes some hazards of deliberately stressing olfaction: smells can’t be ‘put away’ or ‘turned off’ and fragrances which are not integral to the activity may confuse students. Some students may be hypersensitive to specific smells. In addition, odours tend to be unpredictable (affected by air currents for example) and transient (Stockhorst and Pitrowsky, 2004).
One fundamental issue is that some students with MSI have impaired sense of smell. This is particularly likely in students with CHARGE syndrome (Brown, 2007).
In summary the research on olfaction suggests that:
•the sense of smell has a direct link to memory and emotions
• the sense of smell underpins much of our social interaction and awareness of others
•people with visual impairments and blindness may develop more acute responses to olfactory information
• the sense of smell tends to work as a background sense rather than foreground sense, and information gained through smell can be overridden by information from other senses